The Genetic Haemochromatosis Education Programme (GHEP) is a three year programme that aims to educate healthcare professionals about genetic haemochromatosis. It has been in the works for the past year, and due to funding from The Iron Games and The Shears Trust, it has recently been launched.
The first step for Haemochromatosis UK (HUK) was hiring a GHEP Manager, who in fact started last month. Sam Hobbs, has been recruited for this role and will be managing this project. She is an experienced radiographer with great links to develop this programme.
“My name is Sam Hobbs, before starting my role with Haemochromatosis UK, I have worked in the NHS for 10 years and then in the private sector more recently. It was in my previous role that I also became the dementia lead, and trainer for the hospital I was based at, delivering the mandatory training and workshops to all the staff that worked at the organisation as well as offering advice and support to patients and their families. It was also in my role as radiographer that I first learnt about genetic haemochromatosis after scanning a patient’s heart for iron overload.
Together with my passion for helping people to live well with different conditions and for the future of health education and training I knew this role was one in which I wanted to take ownership of and develop.” – Sam Hobbs, Education Programme Manager
Sam has already brought some brilliant ideas into the programme and has started making links with GPs and other healthcare professionals.
“We’re delighted to welcome Sam Hobbs as a our new Education Programme Manager. Sam’s background as a MRI Radiographer, working in the NHS for 10 years, puts her in good stead to help HUK navigate the NHS’s many complex organisational units as we develop improved relationships and understanding between our charity and clinicians. Her passion for health education and helping people to live well will be a real asset to us in our work.” – Neil McClements, Chief Executive
The education programme has started to develop with the launch of accredited RCGP e-Learning available for GPs to log on and carry out in their own time. A learning session with a presentation and in depth case studies is also being developed to be rolled out within different CCGs throughout the country. HUK is also developing GP packs and resources to make it easier for a GP to identify GH as a potential cause of symptoms and to arm them with the knowledge of what tests need to be carried out to give a definitive diagnosis. Best practice venesection guidelines are also being produced to ensure patients receive the best care possible.
“Once we have made a good start with primary care providers we will move on to educate and support healthcare professionals within secondary care. Giving an awareness of GH and its symptoms, diagnosis, treatment and on-going management, with the hope that the age of diagnosis is reduced and people can live well with genetic haemochromatosis.” – Sam Hobbs, Education Programme Manager
Neil McClements, Chief Executive at HUK adds, “Our new education programme is focused on raising awareness of GH amongst the clinical community. Over the next 3 years we’ll be covering the full range of primary and secondary care provision. We know from our members that clinical approaches vary across the country. So we’ve started working to develop and embed best practise in primary care, to equip our hard-working GPs and practice nurses with the knowledge and skills to promptly diagnose GH and care for people affected. “
Tell your GPs about the accredited e-Learning module, as it will mean that more and more GPs will be able to find out about haemochromatosis in their own time, and receive accreditation. They can access the module by logging onto the RCGP portal here.
Haemochromatosis/GH is a genetic disorder causing the body to absorb excessive iron from the diet. Characterised by joint pain and disease, chronic fatigue and weakness, cognitive and psychological difficulties, sexual health issues, skin problems, abnormal liver function, diabetes, and cardiomyopathy. Iron overload can be fatal. It is usually easily treated if diagnosed early.
If you believe you have haemochromatosis or any other condition, please talk to your GP.